Part 15 - The Bubble

Continued from Part 14

In this month in 1976, a Movie of the Week called “The Boy In The Plastic Bubble” debuted. This is going to date me – but here goes:  I remember watching that movie and being fascinated by the interaction of John Travolta’s character Todd and his parents and the fact that the movie was based on a true story.  It was about a boy who is born with no immune system and thus has to live his entire life inside a plastic room, a “bubble” in which everything has been sterilized and through the wall of which he sees the world while he remains protected.  

During the whole time that Dad was sick, my family and I created a kind of Bubble around Dad; it was sometimes a place where we were struggling, but sometimes it was a comforting place too.  We needed The Bubble in part because we were worried about Dad's immune system, especially after he had started chemo, but we had other reasons for it too.  We felt we needed to close ranks to protect Dad from everything - from Cancer and from having to worry about anything on The Outside.  Fighting this thing was a 24-7 job for all of us, and we needed The Bubble around us to keep us focused, to keep our eyes on the goal which was to get Dad better.


As far as I could tell, Dad liked us to be there in the Bubble with him; at one point he said, “One good thing about being sick is that I get to see my kids and grandkids much more often!”  We tried to make life as good as it could be for Dad for the time being in The Bubble; we talked to him a lot about things that we had planned and that we thought he would enjoy after he got out of rehab; two big things he wanted to do were to go to Barnes & Noble and to the movies.  Put those on the Revised Bucket List – check!  Dad was very excited about seeing his two dogs and, of course, about getting Foster the Cat as soon as he got home.  For entertainment in the meantime, we set him up with a portable DVD player in the rehab hospital, but his attention span was way too short for him to care about watching movies or even TV shows.  At night, when he was trying to go to sleep, he often said he wanted to watch TV, but after it had been on for only a minute or two he would change the channel or just turn the TV off.  My mom’s friend brought their greyhound Buddy for an extra visit, and Dad seemed to enjoy sitting with him in the sun in the courtyard of the rehab facility one afternoon.  It was all relative, though, and we were just marking time until Dad could get out of there and, even more importantly, until he was feeling better.

Dad with Buddy at the rehab facility

The daily therapy sessions continued; we tried to cheer Dad on and to point out even the slightest improvement in skill level, but he was nonplussed and non-impressed with his own progress.  “Big deal!” he said angrily after the P.T. told him that he had done a good job with his leg exercises that afternoon.  “A few weeks ago I could run 20 miles and not even be tired.”  It’s hard to argue with that.  

I’ve seen lots of things written about something called “Helicopter Parenting,” when a child’s parents are overly involved in everything going on in the child’s life, so much so that the child never learns how to fight his own battles or to become self-sufficient.  This was different, though, it was necessary for all of us to Helicopter around Dad to care for him, to ensure his safety, to get him the medical attention he needed, and – last but not least – so that we could just be together, in case on one not-too-far-off day we couldn’t.  

Dad, wearing his "Healing Hat" that his sister sent him after his surgery

Something that someone told me early on in my Dad’s illness was that each person in the family would probably deal with the crisis in a different way; as my friend pointed out, our roles in the family and our personalities had long since been established, and having a crisis to deal with wasn’t about to change that.  Something else I learned along the way was that we all had to take turns being The Strong One; being the Big Sister didn’t have anything to do with age – we all took turns being the Leader, the Captain, the Positive One, and, as well,  we all took turns in despair.

The Bubble was by invitation only, and it was an exclusive affair.  There was only so much room and so much oxygen in The Bubble.  Even close friends and extended family members had to watch us from outside.  I’m sure some of them felt like we were poor communicators or selfish or whatever, but we couldn’t worry about that then and I can’t worry about it now.  We did what we needed to do, and I am not for one second sorry about that.  We put all of our energy into doing whatever it took to take care of Dad.  Being with him was hard work a lot of the time; there was no reading a magazine or surfing the Internet when we were with Dad.  The neurological damage left him with no regard for safety, and, not to belabor a point, but, simply put, he didn’t sleep.  Almost at all.

It was hard NOT to think about Cancer and to be alarmed and afraid about the future around him, although, at least for me, being away from him was much, much worse.  I needed to be with him as much as I could arrange, not for his sake or for my family’s but for my own.  I loved talking to him, even when he was somewhat confused or forgetful; some of the things he said were so inspirational, some were very touching, some were heartbreaking, and others were just everyday kinds of conversational things, but I loved them all the same.  I couldn’t bear to let myself imagine how it would be if things didn’t go our way; I was convinced that we would beat the odds, however we had to go about doing it.  There in that Bubble, we were so exhausted, and scared, and desperate, but we were in this thing together and that’s what we thought counted.  

Up Next ... Part 16 - Holding On

Part 11 – Unclear

Continued from Part 10

Just before we had gone to the oncologist’s office, Dad and I were sitting in his room at the rehab facility, and the Pushy Radiation Oncologist returned.  He chatted casually with Dad for a couple of minutes – Dad perkily told him he was “Feeling good, thanks!” when the doctor asked how he was doing that day.  Then Dr. Pushy turned to me and said he would be setting up a session for the radiation to start at the rehab hospital early the next week.  Um, no.

I’ve had lots of instances in my life with my children that my Mother Bear instincts have come out, and now my Daughter Bear protection was out in full force.  I let the radiologist finish talking and then said, “Evidently you're unclear on this, so let me spell it out:  you are not to consult on this case, you are not to come into this room or to have anything to do with  this case unless you get explicit instructions to do so from my mother.  Do you understand?”

“Sure, no problem,” he said as he hastily retreated.  I thought my mission was accomplished until I turned and looked at Dad, who was looking at me with the most terrified expression I’d ever seen on his face.

“Did I do something wrong?” he asked me.  “Why were you so mad at that guy?” 

“No, Dad!  You didn’t do anything wrong!” I said.  “He just didn’t understand that he isn’t your doctor.”

“I don’t understand that either,” Dad said. "I'm really unclear on everything that's going on."

“It’s ok,” I told him. “That’s why one of us will always be right with you.   All you have to worry about is doing everything you can to get stronger.  We'll take care of everything else.”  

And that’s what my mom, my sisters, and I set our minds to doing at that point: following the initial visit with the oncologist, we became laser-focused on accomplishing two things as quickly as possible:  getting Dad through the rehab program so he could get stronger and getting him an appointment at the Brain Tumor Clinic at Duke University.  

There were lots of things happening on the sidelines at the same time, of course.  I coordinated the Get Dad To Duke Mission from home while my younger sister and Mom took shifts with Dad.  My middle sister frantically researched legal and financial issues from her home in California, including disability insurance coverage, medical insurance and sick days through Dad’s employer, Medicare, and the availability of VA coverage and/or services.  She also looked into home health care resources.  We both continued to investigate other treatment options and treatment centers, just in case the Duke Program did not work out; we even set up a website as a clearing house for all of the information we were collecting (www.guest.portaportal.com/IronmanBill).  We sent a flurry of emails every day between us regarding the details of Dad’s care, what was going on at the rehab facility, research on possible medications including Avastin and other physicians, and insurance coverage.  We exchanged emails and phone calls with other oncologists and others in the field of brain tumor research/treatment and seemed to keep hearing that Duke was the place to go and that Avastin was the drug that we needed to get for Dad.  

On the day after the oncologist appointment, the Case Manager came by to meet Mom and Dad and said she would help with legal paperwork (medical power of attorney, etc.) and also with coordinating services for after discharge.  She told Mom that the team would meet the following week to decide how much therapy Dad would need after discharge and whether they recommended that he get therapy at home or in an outpatient clinic.  That night, the Rehab Director told Mom that the team was recommending that Dad stay at the facility for about three weeks.  Mom questioned him about that since we had previously been told the length of stay would be for a week to ten days, and the man told her he felt Dad needed extra time and that he would just talk to me about the specific recommendations when I was there on Monday.

When Mom conveyed this message to me, I was stunned that the team had met without input from us.  In my professional and personal opinion, Dad had not had the opportunity to do his “best” due to the way the therapy sessions kept being cut short or missed due to schedule conflicts and due to the lack of management of medical issues Dad continued to experience – primarily the lack of sleep, the effects of which were exacerbated by the insanely early morning wake-ups by the nursing assistants who came by around 5 a.m. daily to help Dad get ready for the day.  I tried to contact the Case Manager by phone but kept getting her voice mail and did not get a returned phone call despite leaving repeated messages.  I spoke to the Rehab Director by phone, but he insisted that he and I discuss the details including the long-term and short-term goals for Dad, early the next week.   What was going on there was both unclear and maddeningly frustrating; Dad had made little if any progress at all in the five days he had already been there, and we could see the sand flowing through the hourglass every second that passed.  

Over the weekend, therapy services were sparse despite the fact that we had been told before admission that patients like Dad who were there for short-term stays would get 6-7 days of therapy per week.  He was very restless, despite the company and intentional distractions family members provided him.  My aunt took Dad all around the hospital in his wheelchair, which was technically against the rules but was good entertainment for him.  The doctor granted Dad a “grounds pass” on that Sunday so he could go outside for a little while to get some fresh air.  One of my mom’s friends brought my parents’ two greyhounds to the courtyard so Dad could spend time with them there, which he seemed to enjoy.  Dad was anxious to get on with things, though; he wanted to get better and he wanted to go home.

He continued to experience severe heartburn (which we later learned was related to the massive dose of steroids he was taking), fluctuating blood sugar levels, and headaches and to have lots of trouble sleeping despite pervasive fatigue.   There were lots of inconsistencies among the staff as to how to treat Dad’s pain, elevated blood sugar, and insomnia; every day there seemed to be another plan and none of it helped much if any at all.  

In the meantime, my husband and my middle sister’s husband came in from out-of-town to get my parents’ house set up in anticipation for Dad’s discharge from rehab.  I asked for advice from the therapists at the rehab center on this but was told we should "wait and see," which didn't seem reasonable to us since we expected Dad to come home within the week.  I consulted with my physical therapist and occupational therapist friends to help the "Men At Work" figure out at what height to mount the grab bars. They installed grab bars in the bathrooms by the toilets and in the shower, rolled up throw rugs for safety when Dad used the walker, and rearranged furniture to make the house more accessible.  We wanted to have everything 100% ready for Dad to come home.

Dad seemed to be excited about watching the Auburn football game and the NYC Marathon that were going to be on TV that weekend; however, his short attention span and fatigue hampered his enjoyment in things like this that he usually would have savored.  

Late one night that weekend, Dad was getting stir-crazy from not being able to sleep and asked Mom for a book to read.  She handed him the latest John Grisham book that he had gotten for a birthday gift the week before, “The Confession.”   Mom closed her eyes to rest for a few minutes, but after a short period of time she heard Dad say, “Oh my God!  This guy has a brain tumor and he’s going to die!”  In that moment, the weight of the realization of the severity of his own diagnosis hit Dad like a ton of bricks; it was the first time he seemed to fully understand the direness of the situation.  He was, understandably, devastated, angry, and afraid.  He suddenly had lots of questions about his diagnosis, and he was desperate for answers.  Mom dutifully wrote down Dad’s concerns in the Notebook and assured him that they would find out the answers from the doctors as soon as possible.  She did her best to refocus him on the fact that we were fervently working to get him a treatment so “cutting edge” that it had a CURE as a goal and that we believed that he was just the person who could beat the odds.

Next in the story … Part 12 – "Real Cancer"